Posted by Simon (22.214.171.124) on August 10, 2000 at 22:08:30:
Was putting together something for UKCH about OUCH (Organisation for the Understanding of Cluster Headaches), and thought I may as well post it here for newcomers to ch.com.
I would urge anybody not currently a member to think seriously about joining. Advert over!
Back in 1999 a new organisation was founded (what we would call a charity over here) with the aim stated in its
name. It grew from a desire at ch.com to put into action what had frequently been discussed there, ie. to get the
world to understand, and then do something about, C.H.
Although still small, the group is doing an awful lot of work behind the scenes to promote the cause of C.H.
sufferers worldwide. There are several committees which have specific functions,such as communicating with
the media, preparation of public documents, extending membership and so on.
There is a newsletter, and recently the first C.H. convention took place in Las Vegas (by all accounts a
thoroughly worthwhile affair). People from all over the world attended, including the UK.
A C.H. awareness week is planned for September 2000, to raise the profile of the condition.
If you are the sort of person who wants to become involved, this is the perfect forum to do so. If you are not an
"activist" in that way, you still have a role. The more of us who are members, the more weight the organisation
carries. Several neurologists eminent in the field are honorary members and have given much support.
A cynic recently asked at ch.com what were the advantages of joining OUCH. Obviously, if you take a short
term view, there are few things immediately to be gained. However, many would consider that selfish - the
opportunity to be involved at whatever level in finding better treatments, and eventually a cure, for C.H. has to
be important to all of us. I would urge you to consider joining. (There is a fee, naturally; $25 (about £18,
payable easily by credit card) which covers all the admin being done, and the cost of publications - if that
amount is a major problem, there are one or two kind souls who have helped others in the past, and may do so
Visit the OUCH website for more information - but please consider joining - there is important work to be
done, and OUCH provides the structure and impetus behind a lot of what is already happening.
(If I'm advertising OUCH, I may as well plug UKCH too; if you haven't visited, pop in. Fill in the birthday survey, and say "hi" at the guestbook or message board.)
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